A caregiver's journey with Alzheimer's

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Still Molly

I visited Molly today. I fed her lunch. I put a lined and hooded sweatshirt on her, and we walked outside halfway around the building. When we got back inside, Molly looked for a place to sit down. She fell asleep quickly with me sitting beside her. Molly opened her eyes as I got up to go. “I’m gong to get some medicine. I’ll be back.”

When I returned from the pharmacy with her probiotic, Molly was still asleep in the same spot. I whispered a good-bye and left.

They say that the residents benefit from a familiar routine: the meals are always at exactly the same time, and they sit in the same places at the same tables with the same people, three times a day every day. There is always an exercise period at the same time every morning. There is a snack at 2:30 every afternoon. There is a movie at 4:00.

I’ve got my own familiar routine. I like to feed Molly lunch. I feel close to her, and she enjoys the food. I have the (somewhat ridiculous) notion that when I feed her she gets a better nutritional meal because I choose to give her mostly protein and vegetables and skip the carbohydrates. But then I love to feed her desserts loaded with fat and sugar.

I like to take Molly for a walk whenever the weather permits, but she can’t go very far anymore. The amount of exercise she gets walking for five minutes won’t make any real difference in her health.

I like to read to her. Molly seems to enjoy this and laughs. But I can’t really tell if she understands anything. And, realistically, she’s probably too far gone to get much out of the words.

I’m used to the visit routine. It’s familiar to me. It makes me feel better. It creates the “normal” life that isn’t normal at all.

Tonight, I was reading the book Still Alice, a fictional account of a Harvard professor who gets early onset Alzheimer’s. The story was very well researched and written by a Harvard Ph.D. in neuroscience. It is very accurate and convincing.

Several of my friends have told me that they’ve read Still Alice and how much the character reminded them of Molly. Molly, the professor with the Ph.D. from Princeton.

They’re right in many ways. And wrong, too. Yes, Molly was a brilliant teacher and scholar who was passionate about her subject and loved teaching. Yes, Molly fought against her failing memory, was ashamed to tell friends and family that her mind was going, and was smart enough to compensate and continue working after her diagnosis.

But Molly also pretended (with my help) much longer than Alice. In the novel, Alice is very much aware of her decline and what it means. She even gets a bottle of sleeping pills so that she can commit suicide when she gets too bad.

Molly was frustrated at what she couldn’t do sometimes. She wandered and was often confused. But together we traveled and involved ourselves with family activities, often past the point when it was fully safe to do the things we were attempting.

I’d say with the twenty-twenty vision of hindsight that Molly didn’t want to admit her Alzheimer’s and her declining capacities and abilities. When I asked her if she knew she was sick, she replied, “I’m fine.” We both practiced denial.

Was this the right thing for her, for us, for me? I think so. I enjoyed our travels together, our visits to family, our participation in weddings and holidays. I was fully convinced that she did, too, even when she got lost or confused or frightened some of the time.